my deflated balloon
:grumpy: I will start off by saying I am not good with writing things out so please be patient. I was diagnosed 29 years ago with Crohn's. In 1997 when I was 26 I had a colon resection (2+feet removed) where they also had to remove (unexpectedly) my right ovary and felopian tube. I have had many days since that were just horrible but still went to work every day. I always just thought my gut issues were due to something I ate or a bug of some sort. Do not laugh but I never realized that a flare up could be something that only lasted a few days. I thought the only way to call my gut problems a "flare up" was if it were so bad that I had to go to back on steroids. Therefore I didn't find it necessary to visit the dr unless I was in excrusiating pain. After many dr appts and trips to ER the past 4 years it was so bad I was admitted to the hospital last month and stayed there for 8 days. This is going to sound really nuts but everytime anyone would ask me about my Crohn's I always down played it. I didn't realize the issues I was dealing with were NOT normal. I thought EVERYONE had gut issues but I just had them a little more often. Yes, I truly thought this. My GI said it was really bad that I was beyond most medicines. I was very dehydrated and malnurished so my veins kept collapsing. After new IV sites and 3 failed PICC lines in my arm I ended up with a PORT in my chest. I started Remicade in the hospital the end of November. The other meds include steroids and Imuran. After a full month (and a second Remicade treatment) I felt so good, it was amazing. Well, up until yesteray that is. For some bazaar reason yesterday morning the dreaded sick to my stomach feeling was slowly creeping its ugly head back. I had to take a Phenergan to keep from vomiting. I am very thankful for that prescription... feeling like you are going to vomit on top of being in serious pain is horrible! It has been 3 weeks since my second Remicade treatment, my next treatment is next week (Thursday 12-10). Call me naive but I thought that being on the steroids and Remicade would stop the pain and sick to my stomach feeling. Oh yeah, I forgot to mention that when the pain is back is after I go to the bathroom. That has not stopped since being out of hospital. Everytime I go to the bathroom I am in pain. The days that I've had of no pain usually meant I never had BM. Another huge point to make is that up until two days ago my BM has been firm (sorry) than the past two years. Before being back in the hospital I was always on the toilet. Then came the steroids and Remicade and it went to a BM about every 2 - 3 days. But for the past two days I've been having loose stools. Just barely not diarhhea. I have been really good on what I am eating so I do not feel that is a contributor. Since finding this site I've been looking back and realizing I've been having more flares than I knew.
I have been telling dr.'s that it is the worst exactally one week after my period (sorry guys). I had convinced myself that because I am now on all the medicines this month I would not have the problem. I was wrong! It is like clockwork... there must be a connection with period and with Crohn's for me. Has anyone else ever had this? It is not PMS, the Crohn's flares come during ovulation.
Now I am angry and disappointed because of the pain. I had a week without pain or being sick to my stomach. Now I am angry, disappointed and frustrated. I was so happy to be feeling so well I had hoped to be able to go back to work sooner than expected. Today I feel like I had a big slap of reality that I am not as "well" as I had hoped. Please tell me, do you have flares while on steroids and/or Remicade? I am so embarrassed about this whole Crohn's thing. I have ignored this disease for such a long time by thinking most of my problems and symptoms were part of normal life. Now after all these years it feels like I'm playing catch up with learning what is normal/acceptable and what is not. Does that make sense? Now I am grumpy and sad on top of everything. No enegy to even get up off the couch to vacuum the carpet (and dog hair), do dishes in the sink or put the clean clothes away.
Thank you for listening and I welcome and beg for any and all feedback. I take constructive critism quite well.
:grumpy: I will start off by saying I am not good with writing things out so please be patient. I was diagnosed 29 years ago with Crohn's. In 1997 when I was 26 I had a colon resection (2+feet removed) where they also had to remove (unexpectedly) my right ovary and felopian tube. I have had many days since that were just horrible but still went to work every day. I always just thought my gut issues were due to something I ate or a bug of some sort. Do not laugh but I never realized that a flare up could be something that only lasted a few days. I thought the only way to call my gut problems a "flare up" was if it were so bad that I had to go to back on steroids. Therefore I didn't find it necessary to visit the dr unless I was in excrusiating pain. After many dr appts and trips to ER the past 4 years it was so bad I was admitted to the hospital last month and stayed there for 8 days. This is going to sound really nuts but everytime anyone would ask me about my Crohn's I always down played it. I didn't realize the issues I was dealing with were NOT normal. I thought EVERYONE had gut issues but I just had them a little more often. Yes, I truly thought this. My GI said it was really bad that I was beyond most medicines. I was very dehydrated and malnurished so my veins kept collapsing. After new IV sites and 3 failed PICC lines in my arm I ended up with a PORT in my chest. I started Remicade in the hospital the end of November. The other meds include steroids and Imuran. After a full month (and a second Remicade treatment) I felt so good, it was amazing. Well, up until yesteray that is. For some bazaar reason yesterday morning the dreaded sick to my stomach feeling was slowly creeping its ugly head back. I had to take a Phenergan to keep from vomiting. I am very thankful for that prescription... feeling like you are going to vomit on top of being in serious pain is horrible! It has been 3 weeks since my second Remicade treatment, my next treatment is next week (Thursday 12-10). Call me naive but I thought that being on the steroids and Remicade would stop the pain and sick to my stomach feeling. Oh yeah, I forgot to mention that when the pain is back is after I go to the bathroom. That has not stopped since being out of hospital. Everytime I go to the bathroom I am in pain. The days that I've had of no pain usually meant I never had BM. Another huge point to make is that up until two days ago my BM has been firm (sorry) than the past two years. Before being back in the hospital I was always on the toilet. Then came the steroids and Remicade and it went to a BM about every 2 - 3 days. But for the past two days I've been having loose stools. Just barely not diarhhea. I have been really good on what I am eating so I do not feel that is a contributor. Since finding this site I've been looking back and realizing I've been having more flares than I knew.
I have been telling dr.'s that it is the worst exactally one week after my period (sorry guys). I had convinced myself that because I am now on all the medicines this month I would not have the problem. I was wrong! It is like clockwork... there must be a connection with period and with Crohn's for me. Has anyone else ever had this? It is not PMS, the Crohn's flares come during ovulation.
Now I am angry and disappointed because of the pain. I had a week without pain or being sick to my stomach. Now I am angry, disappointed and frustrated. I was so happy to be feeling so well I had hoped to be able to go back to work sooner than expected. Today I feel like I had a big slap of reality that I am not as "well" as I had hoped. Please tell me, do you have flares while on steroids and/or Remicade? I am so embarrassed about this whole Crohn's thing. I have ignored this disease for such a long time by thinking most of my problems and symptoms were part of normal life. Now after all these years it feels like I'm playing catch up with learning what is normal/acceptable and what is not. Does that make sense? Now I am grumpy and sad on top of everything. No enegy to even get up off the couch to vacuum the carpet (and dog hair), do dishes in the sink or put the clean clothes away.
Thank you for listening and I welcome and beg for any and all feedback. I take constructive critism quite well.
